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epasen

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Everything posted by epasen

  1. Hi you all, I've got to say that I actually have three tattoos today, and the day after tomorrow I will have five. I've taken them all when I haven't been on any medication and my sclero is pretty much stabilized: Slow progressing going on all the time. The first one, really small wasn't too easy to heal but it took only like a week. The second one that covers my right side from under arm to the hip healed very quickly and well, like the third one too. The second one actually tells about scleroderma. I love them and I've asked few doctors beforehand. They just said that it's my own dec
  2. Hi Sacha, My name is Emmi and I'm not a mother myself, but I was only 6 years old when I was diagnozed with scleroderma. I'm now 20. I know this is a really complex disease for us "adults" to understand and I can assure you that it's even more complex when you've barely learned to read. If you want any advice I can only say that keep it simple and give answers when asked. :) If you have any questions at all this is the place to find people willing to help. So welcome and I hope you're having a great holiday and all the best for the year 2011 to you and to your family! Hugs, Emmi
  3. Hi Kelsie, Welcome to the forums. :) If you need any youth perspective on the matter feel free to hit me with a message or two. I've also had this condition since 1996 and I'm now 20. I can assure you've definitely come to the right place. Take care, Emmi
  4. Congratulations SusieQ! I know how extremely challenging losing weight can be, but you've apparently done a great job! :) Keep up the good work! Warm hugs, Emmi P.S. For fastening up your project, try joining an army. We lived the last month in a forest training and battling basically 24/7 and eating very poorly. I lost 5 kilos during that time! ;)
  5. Hello Vanessa, I, as well, am very sorry to hear about your diagnosis. But I'm also glad to notice that your family and friends are showing such a huge amount of support, that is the most valuable thing in life at this point, I guess. You showed your concern on how your skin would heal after surgery. I know a scleroderma patient with 90% of his skin being affected by sclero. His body sometimes developes ulcers by itself, which might stay open for years. However, whenever he had had a surgery or something outside from his body which has caused a wound to his scleroderma-skin, those woun
  6. Hi Sheryl, Joelf, Sandy B and Margaret, So good to hear from you all! Thank you for you compliments, it's been quite an amazing year and I just hope that my health stays OK over this winter that's been promised to be the coldest in a century or something. I was actually quite amazed that after spending literally the whole November in a forest in a tent I didn't get my fingers amputated due Raynaud's. Thanks to Adalat I survived even though it was tough every now and then. Good thing that I won't have to go to another training camp for two months now I guess. Margaret, good to hear that
  7. Hi all, I've been missing you guys! It feels like I've been away from this awesome forum for so long. But tonight I finally just sat down, took my sis' laptop and logged in. I'm not sure if you remember me and there are so many new people in here. But anyway, I'm Emmi, 20-year-old linear scleroderma patient from Finland. I've lived with this for 14 years now I guess and it's been a bumpy ride. A year ago I was still on methotrexate, but after talking to my dermatologist we both agreed that I was just medicating my medication. I dropped all pills that I could, started training more s
  8. Hi Viviana, My name is Emmi. I'm 20-year-old girl from Finland with linear scleroderma. I've lived with this condition since I was 6 years and along the way I've got several other diagnoses as well such as Raynaud's phenomenon and reflux. For the first ten years my scleroderma was just great if you can say that about any illness. It progressed at first, and then went to remission. But then again when I was like 16 it started to spread again. At the same time I started taking birth control pills and it made things even worse. Someone once told me that estrogen can activate scleroderma a
  9. Hi there Pawndy, Glad you made it here! I'm sure you'll find these wonderful ladies are great company. I'm Emmi, 20-year-old girl from Finland with linearic scleroderma since -96. I got here in the fall 2007 or 8 I think and I can assure you I've found all the help and answers I've needed from here. Take care, Emmi
  10. Hi there, Last summer when I participated EULAR Annual Congress of Rheumatology I learned one thing: Scleroderma itself has never affected anyone's brain. So probably this forgetting of things is something much easier to handle, and I know you wise ladies are not losing your minds. :) Hugs, Emmi
  11. Hi Erika, thank you for your comment. I just wish that everyone can cope with sclero the best way they can and hopefully will accept it after some time. This was just my story, just one case among many others, but I can assure you letting scleroderma be part of you will make your life a lot easier. All the best wishes, Emmi
  12. My dear ladies, I'm soon to be 20-year-old girl who has had scleroderma for about 14 years now, also during my teen years which are supposed to be worst time to suffer for cosmetic flaws. And here's my story: About 40% of the left side of my body is totally covered with scleroderma, and the pigmentation changes are very, very visible. It's like I'm having a really bad bruise or dark, dark tanning on my tummy, and all of my left leg is shiny and browner compared to the right one. Also on top of that the left leg is visibly smaller than the right one hence the lack of fat-tissue. And
  13. Hi Stacey, It's good to hear that you have a positive attitude towards this, it's really helpful when you're dealing with scleroderma. I hope everything is going to turn better with you. I did get H1N1 vaccination since I'm on methotrexate which means I have to get it. It was like a month ago. I was pretty sick couple of days after the vaccination, a bit of temperature and a very sore arm but it passed pretty quickly. Take care, Emmi
  14. Hi dear, It is very depressing being 19 and sometimes feeling like you want to do something, but you just can't.. You don't have the energy, you're too much in pain or some symptom like this is on the way. The hardest part is probably the fact that I look very healthy, so it's kind of hard to explain to your friends why I don't do things like them, or why I don't do some things some days at all. This can happen on mornings, afternoons, evenings.. Especially in the evenings. Right now it's almost 6 pm here, and after a working day I feel like going out to jog or walk around, but I don't
  15. Hello Raecheal, I'm a girl who was diagnosed when I was about your daughter's age. That was more than 13 years ago, and I've been being able to continue my life almost normally. On the matter of health, there have been few ups and downs along the way, but it has grown me much stronger and more mature. You and your baby are in my thoughts, I'm wishing you all the best and hoping that everything will be fine in the future. If you have any questions or fear, this is the right address. Warm hugs, Emmi
  16. Hi y'all, I'm on the third week of a same flu that doesn't seem to go over. A nurse told me today that I may get a virus infection, get over it and then right away get another one. I suppose it only gets better by relaxing, sleeping and staying warm. Take care, Emmi
  17. Hi Carol, I'm Emmi, 19-year-old girl from Finland with scleroderma as well. I just wanted to say that I know what it is like being a teenager and living with scleroderma. This site is awesome as you mentioned. It has helped us all a lot. Take care, Emmi
  18. Wow Barb I'm so glad, this is exciting! Thumbs up! Emmi
  19. Hi Sam, missed you. Hopefully the fall will be healthier for you! Love, Emmi
  20. Hi love, just a couple of nights with couple of friends. :) We have tickets to this amazing concert for New Year's Eve and we thought we'd spend couple of nights there and explore the city through the day. Emmi
  21. Hi all, I was just wondering weather many of you live in London or near it? I'm traveling to London UK for New Year's Eve and staying for couple of days. A thought of meeting some of you then crossed my mind and I wanted to ask weather there's anyone who'd like to come and say hi to me? If so I'd appreciate a private message to talk more about the subject. :) Take care, Emmi
  22. Thank you for your support, I'll do my best, bit by bit. :) Love, Emmi
  23. Morgan hi, welcome. :) I bet you've already seen how willing these people in here are to help you. I also want to say that you've come to a right place. At first I have to say that I don't have systemic form of this disease and I'm no expert but since I've been dealing with this since I was 6 years old I don't panic anymore. And when you've stopped panicking you can start thinking with a common sense. The best way to communicate with doctors is to ask directly. They normally don't know the answer if they're not scleroderma specialist so you can always be a little sceptic, but this
  24. Thank you all! I'm so happy to hear that you were all there spiritually supporting me. That's probably the reason why everything went so well. Jefa totally knows how to ask the right questions! I was wearing a pretty short skirt from my tights up to shoulders, a white blouse and black tights. I could probably update a photograph somewhere for you to see. :) Sheryl, Stene Prize is a writing competition organized by European League Against Rheumatism. It is for all European countries that are members of EULAR. Pictures later! Take care, Emmi
  25. Hi all, My fingers normally turn just white, maybe all, maybe just one or maybe two or three. Then they usually go red when they're getting warm again. Once I've seen them turn almost black as well. That was kinda scary. Hugs, Emmi
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